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Really hoping someone has some advice. My son (7) is in a flare and he's been waking up two hours or more each night- plus additional waking. Last night he was up for four hours. I'm a single mom and so this all falls on me. I can't function at work or at home. Feeling desperate. 

Sleep has always been an issue but this time it's without the anxiety of past flares (so that's a relief). But, he literally just lies in bed twitching. His legs move almost constantly.

In the past we've tried melatonin, Benadryl, lavender foot rubs, chamomile/melatonin blend. We currently do epsom salt baths, magnesium, a guided meditation- and nothing is helping. 

I don't think I can continue this way. Any advice?

Edited by mountainmom

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So sorry. My dd has dealt with sleep issues for 15 years. But things are somewhat better now. We've tried lots of both herbals and meds over the years.

Her doc recently prescribed her Trazodone 50mg. She started with 1/2 a dose and worked up. More than that can cause headaches in some people. This med will not help my dd GET to sleep, but once she is asleep, she is resting more deeply than she has in all these years. (But she still has to get up multiple times due to urinary frequency, but is able to fall back to sleep.) So in that sense, this med has been wonderful.

She is still having issues falling asleep, but sometimes the over-the-counter Kroger Nighttime Sleep-Aid is helpful. (Doxylamine Succinate tablets, 25mg.) She has to time it just right for this to work. She's tried all the other stuff, melatonin, GABA, magnesium, valerian, etc. and sadly, those have never worked. I hate using meds, but we've had no choice.

Another thought, parasites. They are active at night. Testing isn't reliable. Both my kids were tested - negative. But I listened to a Parasite Summit and decided to try a product they mentioned and we've ALL been passing disgusting things! I know parasites can also depress the immune system and steal important nutrients, which affect everything! Anyhoo, sorry for the disgusting topic, but the supplement we are using is called Mimosa Pudica through Microbe Formulas. We also started slow using l-ornithine to clear ammonia, as parasites are known for excreting ammonia, which can screw up the brain. And you have to keep the bowels moving. DD and I have always been severely constipated, but OxyPowder (it's a form of magnesium) works fantastic.) 

I hope you and your son are able to find some relief soon. We certainly know how horrible this can be.

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Searching_for_help, thank you for your thoughts. I think I will talk the doctor about medication- us both being exhausted all the time isn't helping either of us cope.

I never thought about parasites as a possibility- that's interesting. Would you mind sharing where I could learn more? 

My son also wakes up to pee multiple times a night. But often, then is up for hours. I wish he could just shut his body down but he can't seem to stop the movements. 

Thanks again.

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Only two thoughts outside what you've been trying:  1) time-release melatonin (maybe it would help him stay asleep for longer stints; and 2) valerian root?  Valerian stinks like dirty sweat socks, but it really helped us at points.

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Here are some links:

http://drjaydavidson.com/removing-parasites-fix-lyme/

https://www.amymyersmd.com/2017/05/10-signs-you-may-have-a-parasite/

https://shop.microbeformulas.com/collections/frontpage/products/microbe-formulas-mimosa-pud

Concerning the urinary frequency: You might also ask your doc about a trial of Desmopressin (prescription) and/or ask their opinion on sodium chloride tabs (salt tabs, over the counter). They don't always work for my dd, but but she finds them to be helpful some of the time.

 

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MomWithOCDSon, thanks for your suggestions. We have tried time-release melatonin, but it hasn't helped. I haven't tried Valerian, though. I will try it- hopefully he will swallow those pills.  Searching_for_help, thanks for the links.  I will definitely look into that. 

We are seeing a homeopathic doctor next week, so maybe she will have some suggestions as well.

Thanks so much.

 

 

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I just wanted to follow up in case it might be helpful for someone else. The Valerian didn't help us. However, my son's doctor switched his antibiotics and after three days I noticed great improvement in his sleep- from waking up six times each night and up for hours- to once a night and right back to sleep. It's been five days, so hopefully this will last!

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Mountainmom --  That's interesting about the antibiotics.  From what to what (the switch, I mean), if I may ask?  Did your doctor offer an explanation?  Was it that the first antibiotic was thought to be ineffective over all and that was contributing to the sleeping problem, or is it that the new antibiotic(s) have properties that are better targeted toward sleep/rest?

Glad you found a solution!

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MomWithOCDSon,

My DS (7) was on a combo of Zithromax/Malarone for Bartonella, Babesia, and Lyme beginning in August. The antibiotics initially made a huge difference, relieving lingering PANS symptoms- I felt that for the first time in years I had my son back. However, he began flaring in December, despite the antibiotics. This is what caused the doctor to stop the antibiotics, to see if things would improve. However, they did not and the sleep problems escalated. This is when he was put on a new antibiotic (Arithromyacin). Which so (fingers crossed) seems to be helping.  My guess is that it is helping whatever was the cause of the most recent flare. Not sure it is a solution- but I greatly appreciate the temporary reprieve!

 

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You might want to check his cortisol levels.  If they are elevated at night it could be keeping him awake.  How is his energy during the day?  If cortisol levels are low in the morning he would be extremely tired then.  This problem, linked to the adrenal glands, is remedied with an adrenal support.  (Vitamin C, healthy salts etc)

 

Another suggestion that might be worthy to try is using a daylight therapy lamp in the morning to reset circadian rhythms.

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bws1565, thanks for your response. We haven't had his corisol levels checked- but he isn't tired during the day- or doesn't appear to be. I've been thinking about a daylight lamp. Have you found them helpful?

Thanks for your input!

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My son (who just turned 9) had a very sudden turn in behavior in June 2017. It wasn't discovered until October that he had untreated strep. We treated with two rounds (the first 14 days, which didn't kick it, and the second 10 days ) of antibiotics. He finished the second course in mid-November and has gotten steadily better and I would consider him to almost be back to his "normal" self since the end of December. His second antibiotic was Cephalex and he was unable to stay asleep for more than a few hours on most nights during the entire duration. We assumed it was only that, but he's had insomnia off and on ever since the end of December -- even though all else is good (knock on wood). While melatonin will get him to sleep, his problem is staying asleep. I give him melatonin if he wakes up and can't get back to sleep in 15 minutes. This is more helpful than at bedtime for us, though I've used it then too. He seems okay during the day despite poor sleep. I feel bad for him though and his CB-therapist said that poor sleep will take it's toll in school. We are going to get a sleep study. Not sure what they can say or do. His sleep routine is consistent and considered good hygiene, he doesn't use electronics after dinner and only sometimes watches TV and never more than 1/2 hour (unless we are watching a movie on the weekend or something), he is physically active most nights. If I get any insight or good ideas from the sleep study, I will let you know! Good luck.

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Mountainmom regarding cortisol; they could be elevated at night and normal during the day, causing insomnia.

Regarding a daylight lamp, I have used it for help with getting up in the morning.  It did help, alot.  We have not used it for getting to sleep at night.

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Just wanted to update in case this might be helpful to anyone else. Llmd started my son on GABA supplements and for the first time in years, he’s been sleeping through the night! I know the is no one size fits all answers when it comes to PANDAS/PANS, but, for what it’s worth, the GABA has been life changing (even in this short time).

O_bear, we also mainly have had trouble in the night, or the most trouble, I should say. If you’re interested, I can let you know the name of the supplement we are using. Best of luck to you. Not sleeping is the worst.

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